Who’s Looking After The Zebras?

That, when you have a patient with a list of symptoms, reach for the more common, more likely diagnosis, rather than the rare diagnosis.

Because the rarer diagnosis sticks in the mind more easily, students tend to reach for it, maybe more often than they should, so this phrase was started and has stuck. But the problem is, that is has stuck so hard that doctors don’t even consider that they could have a zebra in front of them. And even if that zebra is a real, genuinely diagnosed zebra, they can still be disbelieving.

This is difficult to get used to.

The Ehlers-Danlos charities and Hypermobility charities around the world have adopted the zebra as their mascot because of what it represents.

May is Ehlers-Danlos Awareness month. And because of that, it is in this month that I’m going to tell you what happened during my trip to the United States last month.

I visited a neurosurgeon over there because I’m a diagnosed zebra and over here, in the UK, I was invisible. I was, I am, in, unbearable pain in my neck and head and have many other symptoms to go along with that. But because doctors don’t take the EDS into account when asked to figure out what is causing my neck problem, it wasn’t investigated in the right way, causing me to seek help elsewhere, help in a place where I knew the doctor understood the zebras.

The reason it has taken me so long to update you on what happened over there is because I was left stunned and shocked. Yes, I went over there knowing something was seriously wrong with my neck and hoping to finally be told I was right. But knowing it and being told that, are two different things. I felt as though I’d been hit by a bus. I also couldn’t believe how shocked I was. I took me weeks to get my head around it. Days before I could even really talk about it.

I have two problems in my neck and a TMJ problem – which is my jaw. The jaw problem – my jaw isn’t stable and comes out of place – is causing some of my headaches.

The two issues in my neck – the main one, causing all the pain and symptoms is atlanto axial instability. Which is my C1/2 moving about where they shouldn’t, on rotation mostly. Causing some minor neurological issues. He said this can be stabilised with surgery and that it could probably be done in the UK because this surgery does get done in the UK. If I can’t find a surgeon to do it, then I can go back to the US and the diagnosing doctor will do it.

The other issue is instability at C4/5/6 with minor subluxation and some disc bulging with minor spinal cord impingement. There are no current symptoms from this but the train of thought from patients who have been stabilised in one place is that once done, the other less stable structures then struggle to maintain what stability they have. So, I have that to look forward to.

Now, I have to find a neurosurgeon who will agree to see me and who will assess me as a zebra. A patient who is different to their other patients. A patient whose body works in an entirely different way. Gravity makes a difference and movement, and they need to believe me when I say how bad it is and how bad my quality of life is, because when I walk into their office, I am more than likely going to look fine. I can’t leave my house without having a shower first and drying my hair. This makes me look human. But because I can get clean, does not mean my body is functioning like it should do or that I am in less pain than I’m saying I’m in.

And even if I can get someone to assess me as a zebra, I then need them to agree with the diagnosis and then agree to surgery. Otherwise, I have to find a lot of money to go back to the States so I can have the back of my head cut open in a foreign country when I’d much rather be at home for something so drastic.

Going over to America has been the start of a journey, I still have some distance to go if I want my neck stabilising so that I can have some quality of life back. And that’s not too much to ask is it? Really?

You’d think it was though…

It’s about time the above phrase was phased out. It leaves the zebras out in the cold with no one to care for them.

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Comments

A heart felt post Rebecca and as an Ambulance Tech (ten years ago now mind you) and in operating theatres, the zebra phrase was alive and well. It was the really good practitioners that stopped when something wasn’t working and said hang on a minute, is this a zebra? I’ve met a lot of practitioners (not just doctors) who find it hard to admit when they are wrong. I’m glad you’re miving forward and I hope you can find a UK neurosurgeon to assess you and move you forward again 🙂 x

All I can say is what I observed before I left the NHS three years ago. Try to be positive and be really firm about what you feel you need and take any information you can with you, you can, a whole folder if you need to. Show them you are confident you know what’s wrong with you and have evidence that they can work with. In a lot of cases it’s not that they have closed minds it’s just the NHS is so stressed they don’t have the time to stand still and just take a deep breath and look at things from a different angle. Like a policeman that’s been on shift for too long and seen too many people abuse them and flout the law, the exception to the rule may be arrested and consider themselves treated unfairly, even though the police are only doing their best in extreme circumstances. I hope that doesn’t sound patronising x

True. But I did have to use the Internet a bit, to head me in the right direction specifically with my neck, but it was in conjunction with knowing my own body and EDS. I won’t tell them that bit though 😉

With this new documented evidence, you should have a better response in UK? I hope so, for it is high time our doctors and surgeons realised that we instinctively know when something is wrong with us, and they should listen to us… better yet, do something about it.

Fingers crossed, but I’m still sceptical unfortunately. But it would be helpful because I’d rather have such massive surgery here at home than so far away. Plus there is the cost implication. And how I’ll be perceived if I have it done abroad.

I’m sorry. You wanted answers though. You have the diagnosis. The US doctor can also communicate with the UK doctor. Don’t take no for an answer. You’re right, it would be much better to get it done there.

Thanks for sharing your story, Rebecca. I’m so very glad that you found someone to actually pay attention to what they were seeing, and recommend some treatments that might give you some relief. I can understand how hard it was to hear what the doctor said, but it’s good to know the truth – the answers. I hope that you’ll be able to get the surgery you need soon.

Hi Rebecca thank you four sharing. I am currently in diagnosis process almost two years of excruciating pain with CSF leak and worsening neck head and arm pain I too have horrendous neck issues and am fighting for treatment in Scotland. We don’t have any specialists in Scotland but will try to fight for help and awareness as both my children have symptoms. My son is waiting for surgery after his second spontaneous collapsed lung in two months. I am going to try to be referred to the Stanmore accessing funds from rare diseases funding. Dr Casey operates out of there and from my research he is the best spinal surgeon in UK . Good luck with your future treatment ☺

Thank you, Lesley. I’m sorry you and your family are struggling so much. I’ve heard about Dr Casey and may go and see him or try someone closer to home first. I’m not sure what to do. I’m currently still letting it mull over in my head at the minute. I hope things go well for you.

Ah, it’s the constant battle against time as well – the pressure to diagnose quickly, rather than correctly, because in 85% or so of the cases it won’t matter that much if the diagnosis is just a ‘little’ wrong and the patient can come back and we can adjust… That’s what’s made me reluctant to seek medication for depression etc. etc.
I’m glad you got some answers in the US, at least, although it seems to be just the first step on a long road… wishing you the best of luck, courage and advice as you continue on this road.

I have nasty neck problems from my rheumatoid arthritis–not nearly as bad as yours. The big difference is my doctors are aware of the progression and ready to move me forward when needed. Of course, that all could change when our ACA health program becomes fully entrenched. Lots of doctors are leaving the profession.

I wonder, could the diagnosing doctor refer you to a UK colleague, someone who would believe his diagnosis and move forward? Or does the ED organization have lists of doctors who are aware? My daughter had a deadly orphan disease when she was 4 and we tracked down the world expert in it. Everything fell into place once other doctors knew what this guy thought.

I do hope you manage to the get the treatment you need in the UK, Rebecca. I can’t imagine how hard it must be to have to fight constantly to try to get what you need, as well as having to endure such a painful condition. x

I’m glad you’ve been able to process what happened when you saw the neurosurgeon and I hope that you can now find a surgeon in the UK who will perform the surgery you need. Some of what you have now being diagnosed with is very similar to my own diagnosis so if you ever want to talk to someone then please feel free to email me. Wishing you lots of luck in getting the help you need. xx